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吉兰-巴雷综合征后的长期残疾与社会地位变化

Long term disability and social status change after Guillain-Barré syndrome.

作者信息

Bersano A, Carpo M, Allaria S, Franciotta D, Citterio A, Nobile-Orazio E

机构信息

Giorgio Spagnol Service of Clinical Neuroimmunology, Department of Neurological Sciences, Dino Ferrari Center, Milan University, IRCCS Ospedale Maggiore Policlinico, Italy.

出版信息

J Neurol. 2006 Feb;253(2):214-8. doi: 10.1007/s00415-005-0958-x. Epub 2005 Aug 17.

Abstract

OBJECTIVE

Even if the majority of patients with Guillain-Barré syndrome (GBS) have a favourable functional outcome some residual motor and sensory signs and symptoms may remain. The aim of this study was to evaluate the long-term effect of GBS on daily life,working activities, hobbies and social status and the presence of residual symptoms.

PATIENTS AND METHODS

Seventy patients with GBS enrolled in a case-control study were examined. Information on signs or symptoms during the acute phase of the disease was retrieved from medical records and an ad-hoc questionnaire administered during hospitalization. Patients were interviewed by phone 3 to 5 years after disease onset about residual symptoms and changes in daily living. Disability and handicap were assessed using the Hughes, Rankin and Rotterdam 9-items scale.

RESULTS

At follow-up 45 patients (64 %) made a complete functional recovery; 19 patients (27%) had some minor limitations in daily life although they were able to perform all their activities independently while 6 (9 %) needed aid for some hours or continuously during the day. Nineteen patients (27 %) had, however, to make substantial changes in their job, hobbies or social activities. There was no significant correlation between clinical and laboratory features during the acute phase of GBS and outcome.

CONCLUSIONS

Although over 90% of our GBS patients had a more or less complete functional recovery, almost 30% of them had to make substantial changes in daily life. These findings indicate that GBS still has a significant impact on patients' life which may go beyond their residual disability or impairment. Treatment of GBS should not be only aimed at improving patients' disability but also at limiting the impact of the disease on their social life.

摘要

目的

尽管大多数吉兰-巴雷综合征(GBS)患者的功能预后良好,但仍可能残留一些运动和感觉体征及症状。本研究的目的是评估GBS对日常生活、工作活动、爱好和社会地位的长期影响以及残留症状的存在情况。

患者与方法

对纳入一项病例对照研究的70例GBS患者进行了检查。从病历中获取疾病急性期的体征或症状信息,并在住院期间发放一份专门设计的问卷。在疾病发作3至5年后通过电话采访患者,了解残留症状和日常生活中的变化。使用休斯、兰金和鹿特丹9项量表评估残疾和残障情况。

结果

随访时,45例患者(64%)实现了完全功能恢复;19例患者(27%)在日常生活中有一些轻微限制,尽管他们能够独立完成所有活动,而6例(9%)患者在白天需要数小时或持续的帮助。然而,19例患者(27%)不得不对其工作、爱好或社交活动做出重大改变。GBS急性期的临床和实验室特征与预后之间无显著相关性。

结论

尽管我们的GBS患者中有超过90%或多或少实现了完全功能恢复,但其中近30%的患者不得不对日常生活做出重大改变。这些发现表明,GBS对患者生活仍有重大影响,可能超出其残留残疾或损伤的范围。GBS的治疗不应仅旨在改善患者的残疾状况,还应旨在限制疾病对其社会生活的影响。

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